Once again, we look to the experts — in this case, to people who use ventilators. From what they have told us about the vent life, we can pass on some generalizations.
The biggest single problem vent users face is the outrageous cost of their equipment and care. Many who use invasive ventilation need skilled nursing, and paying for 24 hours a day of that can be a nightmare. A few have trained friends, family and unskilled help so well they feel comfortable with a minimum of nursing care.
The care level may not be a matter of choice. Many states mandate skilled nursing for vent users. That annoys those who feel they can get by with cheaper help, and alarms those who fear their essential nursing will be cut by the current enthusiasm for cost containment.
At any level of care, by the time you throw in a couple of $10,000 vents and a power wheelchair — and some way to transport them — you’ve run up a rather astonishing bill. Consequently, most vent users must rely on Medicare, Medicaid and entitlements. An admirable few can make enough to pay their own medical expenses, but it’s a fiercely heroic life they lead.
Can you learn to love your vent? Sure, said most — it’s the breath of life, and it becomes part of you. Others curse their vent as a noisy, cranky umbilical cord to a wall socket. Most gripes are not about the machine itself, but about dependency, the perception of being a burden and lack of privacy. What’s the hardest thing about using a vent? It’s unanimous: when it doesn’t work.
Ventilators are dependable and failures are rare. Yet almost everyone we talked to has a couple of horror stories. The lines of defense, successively, are “frog-breathing” for those who can do it, a spare vent, the Ambu-Bag and calling 911. Some admit to a lingering uneasiness about it.
Our experts — even those who have spent several decades on a vent — are generally in good health. The most common complaint is needing more time on the respirator. Most feel they’ve learned enough over the years, and are good enough at reading their own bodies, that they can tell when they — or the vent — have a problem.
The MDA comes in for some criticism, this time for its lack of support for mechanical ventilation for people with Duchenne muscular dystrophy. Why, vent users ask, does the MDA feel their quality of life is so low that ventilation is a waste?
That’s a point everyone agrees on — quality of life should be defined by the person living that life, not somebody else. Not anybody else.
The Quality of Life Issue
Is a reasonable quality of life possible if you use a ventilator?
Many doctors and allied health professiona